still a work in progress (as always)

this week (well more the last few weeks) have been ones of working towards my own healing.

December will be upon us tomorrow and I am still after 22years a mess this time of year. Crying at stupid Christmas songs, weepy when I think of setting up the tree, basically non-energetic about anything Christmas-y.

BUT...

I have started a new wellness regime that will hopefully be something that will get my hormones straight, get my ass moving more and most of all work out the issues in my head.

My bi-polar has been the worse it ever has been in the past 18-24 months. Yes, bi-polar... what an ugly word, makes me think of all sorts of negativity (but then again is there much positive about it??) I have discovered that now that I am in (yet another) new phase of my life... empty nesting... that our life with kids was a huge buffer for me. When those lovely voices started speaking in my head, I could keep them at bay and silenced with the noise of babies, kids and teenagers. Now that they are gone from the home, I find that I have them not even having to yell these days - their whispering is loud and clear ... and scary.
I am not writing this to freak anyone out but to clear my thoughts and put them down and sort them out!

I wrote the above a few weeks ago and walked away... now I am back to try this again... please bear with me...

I have enlisted some very dear sisters to pray for me and these new supplements and so far have noticed some small changes. I am sleeping better, I am not so weepy all the time, I find I am able to focus a bit better on the positive things. So almost a month in and I am going to remain on it for a while more.

Yesterday was a hard day though. We had a care meeting at the PCH for my dad. There are some new changed to final care in our health region and we (more like I) had ate look at it and make changes to his directives. Daddy has always been on DNR  -- right from the beginning, and it has remained so for 24years , but there was a small change that was made yesterday. Not necessarily the best time for me to make this decision with it being a hard time of year as it is....
Also I had met with some of the staff and daddy's doctor about changing his food from puree to mince. So he can be engaged with his eating and possibly less aspiration.  Yesterday we tried to find a happy medium with the speech pathologist, the dietician, the doctor and a few others on the care team.
It was a hard meeting for me in a few ways, first, I had to explain my reasons (which makes sense) for wanting them to make these changes and secondly I had to do it without having a stupid melt down... which I failed at... miserably. I felt like an idiot... I felt a full on, true failure at looking after my dad. I felt like I had dropped balls on so many things and most of them weren’t even ones I knew I was supposed to juggle, that issues that I assumed was being cared for were not and how dare I not know it.
I felt like some of the team was looking at me like I was heartless because I was asking for them to look at his quality of life and not just as a body in a chair that had to eat to stay alive - this is not something I say lightly because in 24 years I have had many, many things said to me out how and why I care for my dad. I have actually had people tell me that I was selfish, heartless or ignorant to have him on DNR, to sometimes wish he had have let go,after the beating so that he would have left and not had to,suffer as he does daily... and so that my memories of him could have been of who he was before my world crashed in on me and have the memories I now have...

I tried to explain that I know daddy would rather be eating food that even slightly resembles food not mush. But the one care worker, kept coming back to how he could choke and aspirate and it would be so traumatic for dad -- which I get but I want his days to be ones that if he is able to comprehend things that he knows he is being treated and respected as the awesome man he was, only I knew as we all sat around that table.
I am so thankful that Dennis was with me because he was able to ask what I was not able too because I was so damn emotional. He asked if there was anything.... ANYTHING ... we can do that can give him a better quality of eating?  I think it was then that the one realized that I was not asking for full time meal changes... just something to give him something to look forward too. It was decided that the home will give him his lunch as mince and his other meals as puree, so that he will always have the chance to eat a full supper if he gets too tired to chew the mince (until he can try to build up the muscles in his jaw)
But it kept being explained how it will look if he starts to choke and what that could entail long term... I wanted to honestly just say YES! I get it!! But lets stop always focusing on "what could' happen and look at what dad may possibly gain from this change!
I was very thankful as well with the social worker who was working hard advocating for daddy and his doctor - who kept saying that he totally gets us looking at his total life quality.
I refrained for saying a lot of negative things (yay me), but it is also so hard with on my mental health to not be able to say what I need to say.

Which brings me back to my circle of sisters that are praying for me. I have tried so hard to be honest and open about my feelings with people but there are just somethings that I still struggle to answer and to ask for prayer for without a full explanation (and possible meltdown)... I am still a work in progress and I am seriously trying to fully rely on God and His promises of mercy, grace and love. I do know that without my prayer sisters and my church family (even though most of them know NOTHING about any of this!)I can't even imagine where I would be. God is good, all the time...

A question that Dennis asked me yesterday was one that I thought I had the answer to, but realize it don't: what is God waiting me to learn from caring for my daddy and going through all that we have gone through and are continually seeming to go through. So if anyone could give me a heads up on this answer (is it possible for God to give someone an answer to someone else question or lesson?)

the call

I received a phone call last week from the PCH where my dad lives -- well someone called and I wasn't home so Dennis tookt he message and relayed to me to call them back.

It was the nurse practitioner.

My heart always does a little bit of a jump when I have to call the PCH as it is and when it is the NP that is calling it does a double flip.
She was calling to tell me about Dad's "new behaviour" (which really wasnt new but they finally took what  I have been telling them to heart and started documenting it). He has been calling out more and more (big surprise), he has been much more agitated (no kidding) and he has just generally not been too happy about things (**shock** followed by **sarcasm**).
I am trying hard to be understanding and allowing that there are many others at the PCH, but when you have a few residents that are TOTALLY incapable of doing anything for themselves, you would hope that they would take things more seriously when a family member (the only family that the resident has that visits regularily {or at all really}) repeatedly reports seeing something that is making the resident unhappy!
Anyhow... apparently they monitored and recorded what they saw over the last 2 weeks and have seen that Dad gets quite vocal (yelling and swearing) when he is uncomfortable. So when he is in his chair (his new chair that was ordered without my knowledge AT ALL)and he starts yelling, they will transfer him to bed -- and when he is in bed and he does the same, they will move him to his chair. This move I am sure will be a lot longer in coming as his room is almost at the end of the wing he lives on and is far from the nurses station and the common area. (basically I think once he is in bed ... that is where he will stay until it is time to get him for meals) I will give the staff the benefit of the doubt tho and see how it goes.
The big issue that really got me is that we are now uping a few of this med's. It is all in Daddy's best interest but it was (and still is) a big tear jerker for me. He really isnt on too much (we were able to ge thim off of alot of unnecessary medication over the last few years) mostly just tylenol for the pain of alwasy being in a chair (or bed),  stuff for BM's and a low dose for depression. The tylenol will now be replaced with something that will not do damage to his kidneys (a bonus) and it will work on the pain issue (double bonus), we are uping the depression meds to help with his moods and maybe help with the yelling and calling out -- but it may make him a bit too lucid (in my opinion) but again we will have to see how it all goes!
I know it is hard to see why giving Dad higher meds that all seem to be bonuses is hard to take, but all that keeps coming back to me is what the doctor told us when he was in ICU in Edmonton 18years ago. Dad will live with his BI (no time line was given)  and start to regress before he ....
It hurts my heart that this could be ... the beginning ... of the end? I dont want my Daddy to be in pain or live a life that he is not enjoying, but it is hard to watch this decent -- even though I have been watching it for 18yrs. Maybe I just need to get a grip and deal....